Hey what's up. I'm a journalism student, and a couple semesters ago, I profiled a friend of mine with SB for my feature writing class. Love to know what you guys think. Name omitted to respect privacy.

____ goes to leave her apartment to head to a coffee shop two blocks down the road. She locks the back door and heads down the stairs to retrieve “Henry” from a shed.

Henry is a motorized scooter, which can be an asset for even short walks when you have spina bifida.

____ has spent all 23 years of her life with this physical impairment. Defined by a lack of a fully-formed spinal cord, spina bifida has shaped her and her perception of the world around her quite a bit.

Today is more of a challenge than normal. The driveway next door, which she must cross in order to navigate her scooter, has been raised. She calls upon the assistance of her neighbor, who happily obliges in lifting Henry and telling her that a ramp will be appearing shortly.

Terms like “shunt” or “hydrocephalus” may not mean anything to most people, but for ____ , they go hand in hand, as a shunt is an apparatus implanted in her brain to correct hydrocephalus, a condition meaning “water on the brain” which affects 75-90% of spina bifida patients. Her current and second shunt has been implanted since she was 15.

“I always have to be aware of every headache and every little thing that could possibly be a malfunction,” said ____

Although she is currently majoring in social work, ____ has a deep interest in medical knowledge.

“If you were to turn on my TV right now, it would be on Discovery Health,” said ____.

Though people tend to be “really apologetic” when asking her about her condition, ____ doesn’t mind and says it fascinates her. Not everyone is so cautious, it seems.

“I have tons of horror stories about the things that people have said to me,” said ____ . “Just all kind of ridiculous, intrusive things.”

As a vocal student at a performing arts high school, ____ says that seeing students of classes that required full physical coordination could be difficult, since she knew she would never be able to obtain the skills with which they were born.

“I would be going down the hallway and people would be walking past me in dance clothes, and that was really hard for me,” said _____

Spina bifida greatly affects movement and coordination, but _____ is still able to walk, as well as operate a car with the assistance of hand controls affixed on the steering wheel

Until she was about two years old, she walked with the assistance of a walker. Her mother shared an amusing anecdote about her daughter, as a toddler, escaping her clutches and making her way into an open elevator, with a walker of all things.

Though ultrasound technologies have made a significant upgrade in prenatal examinations over the last few decades, _____ condition was not realized until she was born, according to her mother, who soon found herself absorbing knowledge about the condition.

“Very quickly you make a readjustment to equipping yourself with information,” said her mother.

What she saw in her daughter as she developed was someone with a very outgoing and bubbly personality.

“Your life has certainly changed from what you expected but it’s still a very good life.”

_______ who befriended _____ about 11 years ago, says she finds her candidness about her condition to be refreshing.

“She’s very open about it,” said ______. “When someone’s not open about it, it kind of weirds me out.”

______quit regular physical therapy when she was about 12 years old, due to finding it “really humiliating and degrading”. She has since resumed it, though on a much more infrequent basis.

In this able-bodied world, says that she often feels invisible and that society today has not developed to being fully accepting and accommodating to the physically handicapped.

“I know it has gotten better, and I’m supposed to feel like we live in this really awesome, progressive society compared to what it used to be,” said ______ “but there’s still so much that could be done.”

On ____'s upper left arm, is a tattoo that reads, “She hath wings”, an excerpt from a Victor Hugo poem that speaks of inspiration and determination. _____ recites the whole poem without a moment’s hesitation.

Ashley Jones goes to leave her apartment to head to a coffee shop two blocks down the road. She locks the back door and heads down the stairs to retrieve “Henry” from a shed.

Henry is a motorized scooter, which can be an asset for even short walks when you have spina bifida.

Jones has spent all 23 years of her life with this physical impairment. Defined by a lack of a fully-formed spinal cord, spina bifida has shaped her and her perception of the world around her quite a bit.

Today is more of a challenge than normal. The driveway next door, which she must cross in order to navigate her scooter, has been raised. She calls upon the assistance of her neighbor, who happily obliges in lifting Henry and telling her that a ramp will be appearing shortly.

Terms like “shunt” or “hydrocephalus” may not mean anything to most people, but for Jones, they go hand in hand, as a shunt is an apparatus implanted in her brain to correct hydrocephalus, a condition meaning “water on the brain” which affects 75-90% of spina bifida patients. Her current and second shunt has been implanted since she was 15.

“I always have to be aware of every headache and every little thing that could possibly be a malfunction,” said Jones.

Although she is currently majoring in social work, Jones has a deep interest in medical knowledge.

“If you were to turn on my TV right now, it would be on Discovery Health,” said Jones.

Though people tend to be “really apologetic” when asking her about her condition, Jones doesn’t mind and says it fascinates her. Not everyone is so cautious, it seems.

“I have tons of horror stories about the things that people have said to me,” said Jones . “Just all kind of ridiculous, intrusive things.”

As a vocal student at a performing arts high school, Jones says that seeing students of classes that required full physical coordination could be difficult, since she knew she would never be able to obtain the skills with which they were born.

“I would be going down the hallway and people would be walking past me in dance clothes, and that was really hard for me,” said Jones

Spina bifida greatly affects movement and coordination, but Jones is still able to walk, as well as operate a car with the assistance of hand controls affixed on the steering wheel

Until she was about two years old, she walked with the assistance of a walker. Her mother, Mary Jones, shared an amusing anecdote about her daughter, as a toddler, escaping her clutches and making her way into an open elevator, with a walker of all things.

Though ultrasound technologies have made a significant upgrade in prenatal examinations over the last few decades, Jones' condition was not realized until she was born, according to her mother, who soon found herself absorbing knowledge about the condition.

“Very quickly you make a readjustment to equipping yourself with information,” said her mother.

What she saw in her daughter as she developed was someone with a very outgoing and bubbly personality.

“Your life has certainly changed from what you expected but it’s still a very good life.”

Lisa Martin, who befriended Jones about 11 years ago, says she finds her candidness about her condition to be refreshing.

“She’s very open about it,” said Martin. “When someone’s not open about it, it kind of weirds me out.”

Jones quit regular physical therapy when she was about 12 years old, due to finding it “really humiliating and degrading”. She has since resumed it, though on a much more infrequent basis.

In this able-bodied world, Jones says that she often feels invisible and that society today has not developed to being fully accepting and accommodating to the physically handicapped.

“I know it has gotten better, and I’m supposed to feel like we live in this really awesome, progressive society compared to what it used to be,” said Jones. “but there’s still so much that could be done.”

On Jone's upper left arm, is a tattoo that reads, “She hath wings”, an excerpt from a Victor Hugo poem that speaks of inspiration and determination. Jones recites the whole poem without a moment’s hesitation.

I feel bad for Ashley she has live with those feelings. I too would feel awkward if I was in a Performance Arts school and people are running circles around you. I just would not want to then be with people since I would get criticized by fellow students.

Thanks for posting that, very powerful story. Your friend clearly is courageous in her willingness to keep going despite the difficulties with SB. Thanks for sharing your story about you friend. People need to read things like that otherwise they will remain ignorant and ill informed.

I think that this is a very well written article, and it is great that you have put the words out there for everybody to be able to see. One of the problems with conditions such as SB, that might not be all that well known, is that patients can struggle to get the help and support that they need from friends, family and the general community, because not enough is known about the condition in order to be able to help them effectively. Your article will help to address such issues, and might just be able to give people the information that they need so that they are able to be a good friend.